Legislative Assembly for the ACT: 2021 Week 04 Hansard (Tuesday, 20 April 2021) . . Page.. 874 ..
potentially born. In the ACT, along with some other jurisdictions, the decision to take on an ART patient is at the discretion of the service provider, with neither regulated criteria for accepting patients nor accredited licensing or registration of ART clinics in the ACT. In the absence of legislation, ART practitioners must comply with the ethical standards of governing bodies, including the Fertility Society of Australia, the Reproductive Technology Accreditation Council and the National Health and Medical Research Council.
I have no doubt that our ART practitioners in the ACT apply sound judgement and due diligence when accepting an ART patient or donor, and in the provision of their services. However, it is of benefit for patients, donors and service providers to undertake a review in the context of comparable legislation elsewhere and global best practice to ensure that appropriate rigour and consistency is applied across all ART services in the ACT.
Of real concern to me in the lack of regulation in the ACT is the matter of gamete donation—that is, donations of eggs, embryos and sperm. Ethical questions arise as to whether conception should occur with the knowledge that a child will never know or have any knowledge of his or her genetic history. I acknowledge that this is a very complex and emotive issue with many different opinions and perspectives. However, I am keen to ensure that this matter is comprehensively researched, analysed and understood so that the ACT has an informed and considered approach to the legislation, recognising the rights of a donor-conceived child to identify their biological parent or, at the very least, obtain information about their genetic heritage and background, should they wish to do so.
The ACT is not alone in a lack of record and recognition of donations. The Northern Territory, Tasmania and Queensland also have no legislation governing donor conception. I call on the ACT government to review the rights of donors to be recognised as such and the rights of donor-conceived children to have the opportunity to connect with their medical and genetic history, should they wish to do so at an appropriate stage in life.
I note that ART can be a traumatic experience for individuals and couples. Many couples spend months or years and tens of thousands of dollars trying unsuccessfully to have a child. Regarding patient support—and this is a big one—I want to ensure that patients in the ACT feel they have the best possible care and treatment when undergoing ART treatment. Across Australia there are many different patient experiences, and levels of quality of service range considerably from clinic to clinic. Patients describe everything from: “The whole process feeling like I was just on a production line,” and “A completely traumatic process. We just felt like numbers; we were not people at all. We were just next in line in a very expensive queue of false hope” to “It is naturally a clinical and difficult process. Friendly and understanding staff seem to be vital to make people not feel like a number” and “Our support team were great. We had the same nurse each time, she knew our situation and we were treated with kindness and care.”
Setting realistic expectations from the outset about the likelihood of success is paramount to patient experience. The recent establishment of the National Register of